Welcome

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This is a community for the frail elderly and their caregivers. It’s all about giving frail old people–Sunshiners–access to independent care at home; they’ve lived with something far from perfect for too long.

What’s a Sunshiner?

Frail old people who have five or more of these characteristics:

I’m near the end of my life.

Every day I need help doing things that matter.

I don’t want to be a burden on the people I love.

I have trouble getting around, trouble with my memory, or both.

I care more about being comfortable than I do about living longer.

I would love to take less medication.

I don’t want to go to the hospital.

Sunshiners deserve our love, time and care. We need to think very carefully before sending them to a hospital or treating them with drugs because they belong at home. They need permission from society as a whole, from doctors and other medical professionals, and especially from their own family caregivers to choose how they spend their last few years on this earth.

22 Responses to Welcome

I am wondering if you are willing to discuss how your Home Care model is funded and the steps you took to create your program. I came upon your article in the medical post today and found it was in line with something I would like to do locally. I will not clog up your blog with any more text, but rather ask if you are willing to share with me how you created your wonderful model please contact me via e-mail. bbahler@platinum.ca

Sadly – or not, because is awareness a sad quality in the end? – none of these commenters’ experiences surprise me. We kept my elderly aphasic & stroke-affected father at home for 14 years, first after a major head injury from a ski accident, then for years after the major stroke, until his final 2 days of life at age 91. Those passed beautifully, peacefully, and with excellent compassionate care, in HOSPICE. This is a word all who love their elderly must learn well.

The other words we must learn well are DNR or LIVING WILL. My physician brother helped my parents create theirs; he was very clear that physicians will still do things which constitute routine life-saving measures unless the DNR (Do Not Resuscitate) orders are extremely explicit. We further discovered during a TIA of my father’s while visiting out of town that ambulance workers were still obliged to transport him to hospital after our call because my mother did not have my father’s DNR with her. After that she carried a copy in her purse at all times, and made sure all his caregivers knew where it was kept at home. She also made sure that those in charge of carrying out the orders if she couldn’t, were proactive & fully informed. Putting a DNR in care of an executor who isn’t forceful & caring, can mean it never sees the light of day when it’s needed.
The current system, quite simply, is set up so that at a certain point it will kill your frail elderly loved-one slowly, while increasing their suffering. This is not said lightly, and I don’t mean to imply that it’s done on purpose. It’s done thoughtlessly, ignorantly, by habit, and by rule.

The answer, Dr. Sloan, to your question of why we do it is two-fold, I think.
1. The general narcissism/laziness of our culture dictates that lifestyle changes inherent in embracing the care of an elderly loved-one so they can stay at home (possibly in one’s own home) appear very onerous & unattractive. Warehousing them in nursing homes has been made into an acceptable cultural norm instead. Interesting that we increasingly think this is a great way to raise the very vulnerable young, also.

2. Most people have no idea what really goes on in nursing homes. I’ve worked in a nursing home also. Briefly. Dismayed, I left to help my mother keep my father at home.

3. Most people also have no idea how massive the rewards of caregiving their frail elderly. Those rewards, though subtle & deep, are as massive as the sacrifice & work this caregiving sometimes requires. Perhaps most amazing to me is how the years of my father’s care & then his passing have retooled both my patience, and what I value. Even my sense of beauty has changed. Now, nothing is more movingly beautiful to me than the gorgeous elderly faces that line the top of your main page (though toddlers run a neck-&-neck second). By contrast, very little which our culture tells me to value seems any deeper to me than tissue paper. Are we, finally, a culture who simply have no idea how to pursue those life experiences which build soul & bring about wisdom?
A profound thank you to you for your compassion, your advocacy, and your own wisdom. Blessings to your continued work.

Thanks once more & to add to yours, here’s another wonderful link for those interested: Dr. Brian Goldman’s “White Coat, Black Art” CBC radio show at http://www.cbc.ca/whitecoat/
All shows get cached & are available at your leisure. Many cover topics of interest to elders & caregivers.

Hello, I was just wondering if you can help my mother, who will be 92 in May, or maybe you know someone else who could.
Her doctor retired over a year ago. Luckily we needed him only once in the last three years that she has been bedridden, to clear the wax in her ears. It is time to do it again. We are back to writing notes because most of the time she does not hear what we say to her.
Since we could not find another doctor to make house calls, I was wondering if you can help.

We are no longer on the palliative care program, therefore had no nurse nor doctor visits.

Sorry for the delay in responding. I suggest you contact our home care program, Home ViVE (604-875-4754). There are six doctors, and also other health professionals, and we see people at home. I think the waiting list is very short right now. Good luck!
John Sloan

I guess this is really a legal question, and the answer would vary depending on where you are (and the attitude of the people in the facility). My experience has been that facilities are private property owned by a business entity or a society of some kind, and the owner quite properly has the authority through their managers to say who can be there and who can’t. One would hope that they would respect the opinion of their residents where visitors are concerned, but that said it would be hard to take the part of somebody barricading themselves in someone’s room and refusing to leave if they were really causing some kind of problem.

If I had trouble with this kind of thing the people I would talk to would be local licensing authority I think.

My mom, in her late 70’s and with advanced Alzheimers, is currently in a facility under Dr. Sloan’s care, I’m happy to say, after reading of his beliefs and approach to end-of-life care. I am optimistically hopeful that she won’t have to suffer years on life support as her own mother did after a stroke, slowly wasting away and totally unresponsive, being kept needlessly existing (a heart beat & minimal brainwave activity only) as her body atrophied, not permitted the dignified passing it deserved. Why does this happen? Because it is possible to force them to go on, therefore, it is good and right? What a sad statement this makes of our society as a whole, that the medical community continues this horrid practice, and by our collective silence, we all condone it.

I was a care aide in the hospital system in BC and what I saw shocked me to say the least. Though many nurses were wonderfully caring, some were downright brutal in their treatment of the elderly. If the families of these ‘inmates’ had any idea what their loved ones go through, they would surely remove them & find a better solution.

I recall one man who’d fallen and broken bones, just returned from hospital, suddenly restricted to a gerichair and now dependent on nursing staff for everything, yet no one made note of this in his care log, so he went without help. One day while passing his room I heard him calling, begging, for someone to help him. He wasn’t one of mine to attend to that shift, but, tending to the needs of a sick fellow human seemed more important than the lecture I would get for overstepping my bounds, so I went in to see what he needed. He begged for a drink of water. He had been without for hours and was desperate, yet no one would take the time. He thanked me for getting it for him, knowing it wasn’t my place to do so.

Another day, he vomited all over himself in the diningroom because of the pain meds he was being given. I was ordered to remove him from the rest of the residents, wheel him back to his room and return immediately to finish feeding the others at my table. He was left, covered in vomit, and so angry and humiliated, with no one to speak up for him. I tried to clean him up but I was yelled at by my superiors for not following their orders. Not long after, I quit. I don’t understand how anyone with a conscience can abide this evil system.

Dr. Sloan presents a disheartening reality in the pages of his book “A Bitter Pill”. Many, and I include myself, will not just read the stories he tells with a distant sense of pity – we relive them through the memories of personal experience. Dr. Sloan’s critique of clinical practice is not mere hypothesis in need of dilution by further study; he does not ask us whether we mistreat the fragile elderly, the question he wants us to think about is why. Really, he says, it is unnecessary, if not reprehensible, and I agree entirely.

During her final months, my 93 year old mother endured many of the same ordeals that Dr. Sloan describes in his book – callous, guideline-based standards of care taking precedence over empathy-based standards of caring and common sense: how about starting a cholesterol lowering drug, at age 93 if you please? Or, initiating blood pressure medication that produced side effects mistaken for the signs of heart failure, which in turn led to even more pills; or a diet of thickened food prescribed to prevent choking which inevitably led to dehydration – a diet ordered despite the fact that I had no trouble getting Mom to drink fluids; then there was the anti-psychotic medication ordered for ‘delusional’ traits in Mom’s behaviour – though, if anyone cared to know, this behaviour had not changed in the previous five decades that I could remember, so why anti-psychotics now ? My call to the psycho-geriatrician went unanswered.

Professional clinical judgement seemed clouded too often by a compulsion to act, whether or not the ‘best’ evidence made a scintilla of difference under the circumstances. Too often in medical practice if guidelines don’t fit the patient we choose to err in favour of making the patient fit the guidelines. Problems, after all, must be matched to solutions, or else, what is it we pay professionals to do? If, perchance, it means that square pegs need be gently forced into round holes, so be it. But who are these older people? What was the story of life and meaning that came together in a woman of ninety-three years? I had to repeat myself far too many times on that account and on the account of my mother’s wishes to believe that providers had either the time or interest to learn or make better judgements based on what they knew of my mother, the person.

For all the bleakness and hand-wringing I went through with my mother, one incident stands out above all others that shows, just how close, and, by the same token, just how far, we are from providing the type of comfort and care the elderly deserve.

It was on a particular evening that I came upon my mother in her room where she stayed at an assisted-living facility. Two caregivers were in attendance, one a member of the nursing staff, the other a young personal care worker. Mom moaned with every breath. During the last few months she had taken to moaning regularly, though for what reasons nobody was entirely certain. It was never as simple as asking for an explanation from Mom. Was it pain? Was it psychological? Mom fought as a member of the Dutch resistance during WWII and I knew only too well of the terrifying flashbacks she suffered.

Among the nursing staff, a few found it especially difficult coming to terms with my mother’s behaviour. Their foremost concern was to relieve Mom of physical pain, on the chance this was the cause of her distress, which invariably meant more narcotic analgesia. This night, I demurred vigorously. Narcotics meant constipation, cramps and difficulty breathing. No, I did not want Mom to have more pain pills. This was not my first run-in.

The nurse left the room. With none to overhear, the personal care worker, kneeling by mother, turned to me and in a quiet voice said, “When your mother moans, I gently stroke her head and comb her hair, or I’ll take some lotion and massage her legs, then she calms down.”

We are that close to getting it right – yet, also still that far removed.

John, thank you very much. Using “A Bitter Pill” as a sort of Rorschach, I am stunned at the difference in response between people who have personally experienced what we’re talking about, and people who haven’t, including healthcare practitioners, administrators, decision-makers, and of course everyone in the hospital. Your note sure strikes a chord with me.

Thank you, John Sloan. Your approach is so sensible and humanistic, and for that it will be rejected by various segments of the society that will ultimately benefit from it. It recognizes the uniqueness of conditions we all present at the evening (And earlier times) of our lives, and society would benefit from adopting your approach.

What a refreshing lecture about what we can do as we age. I am so pleased that the government is “listening” to the idea of doctors doing house calls. My concern right now is over the counter FOBT kits. No one wants to deal with the area below our waists and especially to go to go to a doctor to ask for a fecal occult blood test. Is it possible in this province to go to a pharmacy and buy a FOBT kit? Yours truly mary macdonald

Thank you for seeding this important dialogue at White Rock Library plus the great book. Be Prepared – a motto of Guides neds to push elders from denial to plan ahead. Know how the system works, what if or for neighbours and friends. Knowing who to call is almost as good as knowing – reach out, do your homework and get organized so you won’t have to agonize. w.bchealthcoalition.ca is one pro-active connection to learn more and speak up ALSO w.standUPforseniorscare.ca

I recognize very well that a”right to die” is a sensitive subject for many and that we are all entitled to our own beliefs but I would like to share a story about a sweet old lady that I cared for. I met her when I was doing my practicum to become a careaid. She was my very first “assignment”. One day I was feeding Mary, when out of the blue she said “I’ve had enough of life- I’m ready to go. I’ve had a good life, I know my children worry about me and I want to be done now, it’s only my body being maintained.” I felt awful as I encouraged her to have another bite of her mush called lunch. ” I’ve written to St Michael (the patron St of death) she said, and the bugger he hasn’t answered me yet.” I responded by saying, “is this something you talk to your sons about?” “Oh yes, she replied , I’ve asked them if they know any gangsters!”.
Obviously Mary had a wonderful sense of humor but her point was made, longer is not necessarily better and frankly, quite often it’s worse. Wouldn’t you rather live 3 months in peace (hopefully in your own home) then 3 years in a facility, existing?? I’m only suggesting that we start talking about having a choice. For all of our sakes, something needs to change. So lets start talking. Thank you for giving us a platform Dr Sloan, for getting this important ball rolling.

Dear Dr. Sloan,
Thank you for your work, your passion, and sharing this with others by
writing.
Two comments:

Your work and writing give that “permission” or validation to others in the
profession who feel uneasy swimming against the tide of the medical
industrial complex. You help allow us to also report that while the Emperor
may not be naked, he is certainly scantily clad.

There is a wonderful scene in the movie “The Remains of The Day” (a 15-20
year old movie) that nicely depicts what having a stroke can be like if only
the sunshiner is allowed to stay at home with those who care for him.

We are in our80,s live in our own house .3 yrs ago E was diagnosed with Parkinson.
M is the care giver since E,s knee surgery 2 yrs ago . Drop foot caused slow
recovery from knee surgery.Our daughter Linda Rose /Coastal health keeps
us up to date with home care and institutional facilities.Regret dr Stoppel visits are yearly and absence of G P,s for Parkinson patients